When Should Parents Let Children Advocate for Their Own Health Care?
After I suggested my 10-year-old daughter switch doctors, my daughter caught me off guard by voicing her own preference. Who gets to choose the doctor for kids over a certain age and what is a parent's role in this process?
"Tell me what's happening, sweetie," the pediatric rheumatologist instructed my 10-year-old daughter Isa. Her pen was in hand, ready to take notes.
"My fingers swelled up after I hit my head and got a concussion. It hurts to open and close my hand," she replied, nervous, sandwiched in between the doctor and me.
"She's been—" I started to say, but the doctor cut me off and continued to ask my daughter questions as if I weren't in the room.
My cheeks burned red. I was her mother after all—I did not like to be ignored by healthcare professionals. As a Latina, I had been failed by nurses and doctors for being a woman of color. One experience left me in a coma and permanently brain-damaged. After that, I changed careers from attorney to narrative medicine advocate.
At 47, I was a "professional patient" with five autoimmune diseases, a pituitary adenoma, and a brain injury survivor. The irony of my frustration wasn't lost on me. I had encountered my fair share of cold and detached doctors over the years who treated me as if I was less than human. One specialist made me strip down to my underwear, don a paper gown, and wait in a frigid examination room for close to an hour without even offering a simple, "I'm sorry for the wait." And another physician told me he couldn't believe I was so articulate considering all of my medical conditions, as if being sick meant I couldn't communicate.
I wanted my daughter to never experience the same lack of care from healthcare providers that I did. I knew that Isa ran a risk of inheriting the bad antibodies I carried, so I attended all appointments with her ready to speak up on her behalf. Not every doctor would understand my medical history. My daughter did not fully understand. So on top of being an advocate for myself and my patients, I feel I need to advocate for my daughter's health as well.
But as I sat through the appointment, I saw that Isa seemed totally comfortable communicating with this doctor.
After a thorough examination where the doctor was entirely focused on Isa, she finally turned to me to share her decision not to test her for an autoimmune disease since she was too young for any form of treatment. "It'll stress her out, and I'm sure it'll stress you," the doctor said.
On our way home, I told Isa that if her symptoms return, I wanted her to see a doctor at the hospital where I go.
"No, Mami. I like the doctor I just saw," she said. She said she liked the doctor's decision not to do further testing and was relieved not to know if anything was at the root of the cause for her current swelling.
Her words caught me off guard. I stopped and thought, "Who gets to choose the doctor for kids over a certain age?" My kid was ten, but she had been expressing her satisfaction or dislike of doctors for a long time. She didn't like it when they talked down to her, when they didn't make eye contact, or when they rushed through the visit—all solid reasons. The specialist we'd just seen hadn't done any of these things. The reason I didn't like the physician was because she hadn't catered to me.
"It is the parents' responsibility to provide medical care for their child and ultimately the choice of a doctor rests with them," explains Joan Musitano, LCSW, MSEd, a child development specialist and an infant-parent, child, and adolescent psychotherapist in New York City. "The process that leads to that choice, however, must include paying close attention to the child's nonverbal and verbal communications about their physical symptoms, mental states, and feelings about going to the doctor."
There is no specific age when a child can suddenly know what care they need and what doctor can provide that service, she adds. Instead, learning to advocate for oneself is a process. "It begins at birth with developing the ability to communicate body states to adult caregivers," she says. "As children grow and mature, they should be encouraged to ask questions and to express their feelings about the doctors who are treating them. Parents should listen, dialogue, help their children process their experiences, and make decisions that take these experiences into consideration."
Trauma psychotherapist Kristen Slesar, LCSW, MS, director of the Bronx Child Trauma Support Program, points out that children often don't know how to voice their like or dislike of health care providers in the same way adults do. "While abuse by medical professionals might be uncommon, it is crucial for caregivers to take their children's concerns and complaints seriously," she says.
In the worry over my child's health, I had disregarded the fundamentals of my profession as a narrative medicine instructor. In my work, I help train clinicians to treat the patient beyond a history of symptoms, to hear, interpret, and be moved by patients' stories of illness. I give talks empowering patients to advocate for themselves. My daughter's specialist was doing exactly what I trained doctors to do: she was listening to my daughter's story. And my daughter was advocating for herself.
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Musitano confirms the importance of gaining a sense of ownership of one's body in early childhood. She says, based on her extensive work with families, that "all too often, parents decide for the child what the child's state is and act according to their assumptions, which can lead to a child's becoming confused about what their body is telling them. One of the most valuable skills a parent can acquire is the ability to separate her or his own feelings from what their child is actually experiencing."
She adds that every child matures at a different rate, so their ability to make independent decisions about their health and medical care develops at a time unique to them as well. "This depends on many factors that are specific to the individual, the culture of the family, and the nature of the medical issue," says Musitano.
I looked into my baby's eyes and realized that she may have reached this new phase of self-advocacy. I may not have liked this particular doctor's bedside manners when it came to parents, yet I loved how she saw my daughter's concerns, how she listened to her, and answered all of her questions. I put my ego aside and saved the clinician's phone number into my cell. Still, I said a prayer that we would never need to see that doctor again.